Most of the time, since arriving back home in mid-2107, J has been sleepy, quiet, and expressionless, but then there are these moments! Moments reminiscent of Awakenings, a 1990 American drama film that tells the story of a fictional neurologist who discovers the beneficial effects of the drug on catatonic patients. Similar to the film, suddenly, J appears alert, conversational, motivated, and interactive. These moments have happened occasionally over the past four years but pass quickly and get tossed from my memory since they falsely raise my hopes of a continuing recovery.
This time is different. The most recent awakening started several weeks ago and the improvement has been noticeable, dramatic, continuing, and worthy of mention. Most striking is that we can have a conversation! I’m not sure if you realize how amazing that is — J has been largely quiet since the stroke, exhibiting only short bursts of conversational energy before exhausting herself. Now we can talk about what’s going on in the world, in our lives, with our daughter, etc. It still takes a lot of effort and she’s not always understandable but it is a true conversation. Often the conversations take place in the middle of the night and are nonsensical, relating to something dreamed or dredged up from years old memories. She usually forgets those talks by morning. Still, we’re talking — I’m not feeling so alone.
But Wait There’s More…
I’m most excited about the improvements in speech since for the first time, J is able to tell me what she is thinking and feeling, but there is much more going on. J is more situationally aware, and questioning what she is going on around her. She even suggested that she wanted to work again, and has asked to go out more instead of being planted in front of the TV. She proudly stated that she was going out to get a sandwich — the only problem being that it was 3AM. Regardless of the timing or the content, this is a huge change.
There are exciting developments on the physical front as well. The physical therapists have confirmed this. J has wanted to take walks, has been able to transfer between the car and the wheelchair with minimal assistance, and has attempted to go wandering the house in the middle of the night on her own — which I’ve quickly interrupted. The motivation and the energy is there but the motor control is still not, though there are improvements along that front as well.
The other night, I noticed her doing seated hamstring stretches in bed — I was even aware she could sit up like that on her own. She has been more successful at feeding herself (with the assistance of the Neater-Eater), and she even held her own cup of coffee for a short time. I’m used to having to guide her through most hygiene and dressing activities but now I’m often playing catch up as she gets ahead of me.
There is Also a Dark Side…
All of this advancement appears to be coming at a cost. Her ataxia is noticeably worse, apparently extending beyond her left arm and leg to, at times, head nodding and a full body shakiness. She isn’t sleeping through the night, and neither am I. She’s restless, hot and cold, thrashing about, often in more of a dream state than reality. Her short term memory is still impaired so I get the same questions and we have the same discussions night after night. She’s more antsy in general, requesting more interaction and activity, which is great except that I’m so sleep deprived.
Clearly her brain is working hard to figure things out evidenced by regular questioning of what’s going on. The middle of the night conversations reveal a lot of confusion about places and people. I’ve recorded a couple of them and played them for J to see if she can figure out what she’s talking about, and her reaction was “I think I’m nuts!” That reaction (which isn’t the case) is in itself an encouraging sign.
So What is Going on With These Moments?
The short answer is, “who knows?” There haven’t been any recent changes in meds or diet. I can’t say that I’ve seen a regular progression of improvement leading up to this. It could be just that time has helped her brain heal, and some set of neurons decided to fire correctly. Her neurologist hasn’t offered any useful insight other than to say we shouldn’t change her meds at this time. The brain is mysterious!
It’s not unheard for significant changes to occur suddenly. People awake from year-long comas, dementia patients have periods of lucidity, and disabled individuals regularly overcome life-altering obstacles. Maybe having faith, staying positive, and prayer has a role in this. Who knows?
Now I’m focused on keeping these moments alive, helping J find enjoyment and independence, and trying to get a full night’s sleep. We’ve operated under a very practiced routine for years so it’s a whole new experience pushing boundaries again, letting J attempt to do more on her own, and having more input into her care and life. Don’t get me wrong, I couldn’t be happier about this… it’s just new, disruptive to our regular routine, and raises so many questions.
What Comes Next?
Honestly, I’m not sure. These moments could disappear as quickly as they appeared. Something completely new and unexpected could happen, or we might see continued progress. The only option is to continue to take life one day at a time, and try to maximize J’s ability to live in the moment, carefully re-engaging with normal daily life — as normal as it can be during the ongoing pandemic. Regardless, it’s exhilarating to see aspects of J’s old personality emerge, to see her smile and laugh, even to have her yell at me. One exciting coincidence is that Oct 22 marks our 15th wedding anniversary, and we have a special weekend planned — I hope these moments hold at least until then so we can all enjoy the celebration.
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